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Description

Progressive multifocal leukoencephalopathy is an infrequent disorder of the nervous system that primarily affects individuals with suppressed immune systems caused by things such as cancer, autoimmune diseases, HIV/AIDS, organ transplant medications and Crohn's disease. The disorder, which is caused by a common human polyomavirus called the JC virus, is characterized by demyelination, or destruction of the myelin sheath. The myelin sheath is the fatty covering which acts as an insulator on nerve fibers in the brain. Common symptoms include weakness, changes in behavior and awareness, mental deterioration, vision loss, speech disturbances, ataxia (inability to coordinate movements), paralysis, and, ultimately, coma reflecting the multifocal distribution of brain lesions. In rare cases, seizures may occur. Roughly 85% of our population has the JC virus. We often contract it as children in the normal course of childhood and it usually does no harm. But, should your immune system become compromised, the JC virus can become activated.

Currently, there is no cure for PML. The course of PML is progressive. Death can occur between 1 & 4 months after onset. There have been reported cases of survival from months to years. PML is debilitating & isolating. This group is intended to educate, support and inspire. Participants are encouraged to share ANY information related to their experience.

DONATIONS TO NORD's PML Research Fund: http://www.rarediseases.org/helping/donate

NEW SUBSCRIBERS: There have been MANY useful conversation threads since 6/06. Use the search function in "messages" to look for a specific topic. Although our group is here anytime to discuss anything PML related, we often get asked the same questions over and you'll likely find the best answers back when the question was first answered. If you can't find the answer to your question, aren't satisfied with the answer you found or wish to initiate a new or personal topic, please do so! Thank you!

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Benefits
I wonder if I I'll have the chance to recover. My benefits ended on 1/26 & I can't afford my medications so I might not have a chance to recover. A lot to lose
Posted - Fri Feb 3, 2012 4:48 am
Wesley Long
wlong35
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register/doctor of questionable diagnosis
I know there are lawyers involved for some medication, you might want to check into it. Although drs may no better than us they are human & make mistakes. If
Posted - Wed Feb 1, 2012 7:09 pm
Wesley Long
wlong35
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Re: registrar/doctor of questionable compotence
... she made convincing case and as crabdrygwere ineffective controlling my relapses copaxone rebif avonex and betaseron
Posted - Wed Feb 1, 2012 5:52 pm
mikarytky
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Re: registrar/doctor of questionable compotence
It's great that you got the second opinion and that it went your way !  Ron, I read the Tysabri issue as the doctor explaining why she didn't take him off the
Posted - Wed Feb 1, 2012 5:38 pm
Alan Kelchner
a.kelchner
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Re: registrar/doctor of questionable compotence
That's fantastic news that she convinced the other physician to proceed with treatment, but did I understand you correctly? She admitted to having kept you on
Posted - Wed Feb 1, 2012 5:14 pm
Ron J Crutcher Jr
pdxron31
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